When an ALS caregiver takes a much-needed break from the daily routine

I left my husband, Todd, at home in Michigan last week while I flew with our teenage son to Florida during his spring break. Getting away takes planning and requires a lot of help at home while I’m gone.

For me to be able to leave, we had to assemble a team, including backup help. And Todd had to be flexible about letting others, like his sister who came from out of state for the week, take over his personal care tasks. In preparation for our trip, we made a new ALS411 video about how we are now doing manual assist coughs. I taught Todd’s sister our new method before I left, but I also thought the video might be helpful for her to review when Todd’s lungs fill with mucus.

I felt sad about leaving Todd at home, but travel is not enjoyable nor practical for him at this stage of his ALS progression. I needed a break from the demands of being on duty as his caregiver, but I still felt the loss of his presence as we waited to board our plane at our small-town airport.

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Taking in a new view

Among the passengers was a family with young children, and one of their kids, probably about 2, wandered over toward us, prompting a gentle admonishment from his mom.

I smiled, remembering the challenges of traveling with young children. The last plane ride Todd and I took with our kids was just a year after his ALS diagnosis, when we had an 18-month-old and a 5-year-old. We flew to California to escape the Wisconsin winter, visit friends, and make memories while we could. Todd was still walking then, but his arms were weak, so I had to carry all the luggage and wrangle our toddler.

I also observed on this trip retired couples heading south on vacation. Seeing those happy couples stung a bit as I thought about how they are living a season of life that Todd and I will never have.

But then we were off. Our flights went smoothly, and we arrived in sunny Florida.

I did have several moments that raised my anxiety while we were away. Shortly after we arrived, I got a text from a night caregiver who said she would be resigning. I do not do well without sleep, so it’s always stressful when we lose nighttime help. And then a few days into the trip, Todd’s morning caregiver, who had been getting him out of bed, got sick and we needed to arrange for a backup.

Beside that, I was mostly able to embrace our time in Florida and be present there.

At home, our days often feel long as we are doing the same thing over and over, especially now that Todd is homebound. But on vacation, I took in new sights. I came across tiny lizards, tortoises, and alligators when I went on walks. I found shark’s teeth at one beach and kayaked through mangroves to a beautiful sandy key on the gulf. Novelty, sunshine, and the calming beauty of ocean waves are all restorative.

It was a long enough trip that I was ready to come back to my house and our daily routine. And I missed Todd. You can’t miss someone when you are always with them.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.